New recipe goes out in the SPRING newsletter on Thursday!
Caroline Elizabeth Christian
@carolinechristian.bsky.social
Professor #ssu, writer, mother disabled by #hEDS #MECFS #LC; I write a blog called Frozen in Amber about the science of and lived experience w/ #hEDS #MECFS #LC | chronicallycaroline.com
Looking to connect with people who have median Arcuate Ligament syndrome MALS who have had surgery. What's your pain benefit? Any relief from other symptoms like nausea? Any effects on your comorbids?
Since the election, I have experienced profound dread, fear, sadness, anger, etc. Yesterday a new and more potent emotional valence set in due to the actions of 10 democratic senators: Hopelessness and despair. This is what happens when you feel no one w/ leverage is fighting for you.
Dave Levitan@davelevitan.bsky.social · last yr.From inside the DoD: “Schumer's bungling over the past two months & creation of this lose-lose scenario is a complete dereliction of his duties. This was the sole moment where they had any real potential leverage to stand up and fight for the Constitution & they completely blew it from day 1.”
Former SSA commissioner Martin O'Malley: “We have a 50-year low in staffing while the baby boomer generation is swelling their ranks. That’s the underlying reality...these guys appear hell-bent on breaking it." The latest Press Pass from @cheetah.bsky.social: www.thebulwark.com/p/elon-is-co...
Elon Is Coming for Your Social Security
Plus: Don’t call it a “State of the Union” speech.
thebulwark.com
Aaand there it is: 2/19 - Executive Order from White House: 'Commencing The Reduction Of The Federal Bureaucracy’ "(iv) the Secretary of Health and Human Services shall terminate the Secretary’s Advisory Committee on #LongCOVID” HT @bhanlon15.bsky.social www.whitehouse.gov/presidential...
Commencing the Reduction of the Federal Bureaucracy
By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered: Section 1.
whitehouse.gov
Sign up for my free newsletter if you're interested in this (dead easy) Cauliflower Soup recipe!! It goes out on February 15th. 💗 rachelriggs.substack.com #paleo #dairyfree #healthyfood #eatyourveggies #mecfs #longcovid
Watching the RFK hearing fills me with more despair than I thought possible. He's a lunatic. Republicans are craven. Democrats are useless. And all of these people know that this is a farce, but they're playing their parts instead of living in reality.
“Constitutional crisis” is too mild a phrase for what’s happening here. I just don’t know what else to call it.
Faine Greenwood@faineg.bsky.social · 2y ago“NSF has received an email from its director to ignore the judge's stay of Trump's order and implement the spending pause.” x.com/BBKogan/stat...
My NIH study section that was to meet tomorrow was one of those canceled. This represents many months of work by the applicants and by the NIH staff and reviewers. Devastating is the correct word.
Jane Liebschutz, MD MPH (she/her)@liebschutz.bsky.social · 2y agoAll NIH study sections canceled indefinitely. This will halt science and devastate research budgets in universities.
Research study opportunity! The Mestinon/LDN LIFT study is seeking eligible participants within 150 miles of Brigham and Women's Hospital at Harvard Medical School. See details below. #pwME #MyalgicEncephalomyelitis #MECFS www.omf.ngo/studyme
StudyME
StudyME: A comprehensive resource for ME/CFS research, providing valuable information and study opportunities.
omf.ngo
I'm on the late shift covering the impact of these Los Angeles fires, and looking to speak to people who have evacuated so far, and whose homes and businesses have been affected. If that's you or someone you know, send them my way: Lois.beckett@theguardian.com.
If you're in an evacuation zone in SoCal, please check in with any disabled/aging neighbors you have to see if they need help evacuating.
Has anyone seen any updates on the REVERSE LC trial evaluating Baricitinib in pwLC? Thanks! news.vumc.org/2024/02/22/n...
NIH-funded trial to determine if immunomodulation can improve brain and cardiovascular dysfunction in Long COVID
Vanderbilt University Medical Center is working with scientists around the U.S. to launch the first Phase III, multicenter, placebo-controlled trial to determine the effect of immunomodulation on Long...
news.vumc.org
Probably against all better judgement, a journal has invited me to write a guest editorial on the topic of Long Covid. What should I cover?
It's been great to see the influx of people from the ME/CFS and long Covid community in the last week. Here's a starter pack by @chromatowski.bsky.social that's worth checking out: bsky.app/starter-pack... It lists interesting people to follow and also has a feed #MEcfs #CFS #PwME #LongCovid 1/
Hello! Hoping to connect with friends in the #MECFS and #Longcovid chronic illness communities!
Workwell teams up with STAT Health Our research aims to understand whether cerebral blood flow is reduced during post-exertional malaise (PEM) and if this metric helps explain the worsened orthostatic symptoms many report while in PEM. Check out our new blog on this exciting collaboration!
Workwell Teams up with STAT Health | Workwell Foundation
Workwell Foundation recently teamed up with Daniel Lee, the co-founder and CEO of STAT Health, to test an exciting new in-ear wearable device that measures blood flow to the head.
workwellfoundation.org
The Open Medicine Foundation has arrived here, guys! @openmedf.bsky.social
Patients often ask about a concise, accurate, and authoritative resource on #MECFS to share with their doctors - this new paper co-authored by @exceedhergrasp1.bsky.social is a fantastic choice. Well done!
It's ME(Jaime)@exceedhergrasp1.bsky.social · 3y agoOur paper has been published in Mayo Clinic Proceedings! This is a Concise Clinical Review, meaning it MUST be short, with a limited number of pages and citations. Drs. Grach, Ganesh, and Chon and I worked very hard to pare it down to the essentials. www.mayoclinicproceedings.org/article/S002...